Sunday, 12 June 2016

The masking child: Book club analogy.

Let's assume you know nothing about masking. You have no experience of a child who is completely different in the safety of their own home.

How do you describe them to someone else?

I have explained many times to disbelieving people, including experts, what is going on, but my words dont work, I can't get it across effectively enough for them to understand.

So I have come up with an analogy which I think will help the most reluctant observer to understand what some of us go through every day. It may be brief (you'll be pleased to hear!), but I hope others with a masking child will find it a helpful way to explain to their families and friends, and even their child's teachers and other experts involved in their care.

The Book Club

It's the last Friday of the month. Book club night has rolled round quickly.

You have diligently read the month's chosen book, Neurotribes, by Steve Silberman, full of eye opening information giving you an insight into autism and its history.

You take your contribution; a bottle of wine, and drive to the venue where you will meet your fellow Book Clubees.

Sitting in the cosy lounge, the fire flickering brightly, shoes kicked off as you sit back in the comfortable settee, you chat about your week, biding your time until the point where you can discuss in depth the book that you devoted so much energy to.

Lisa starts the ball rolling. You hold your breath, waiting to hear that they also found the book gripping, and were unable to put it down, causing several sleepless nights.

As you continue to give your opinion, you slowly realise that you haven't read the same book as your friends. You ask to have a look at Lisa's copy of the book. You flick through it and see that the main body of text is written in code. Puzzled, you look at the cover of the book.

Realisation dawns.

The dust jacket of their copies of Neurotribes has been printed with the synopsis from Katie Fforde's latest best seller.

You are the only one who has been able to read the book.

You are disappointed. You came prepared to discuss the finer points of peoples experience of autism, you put time and effort into making sure that you could talk knowledgably about this chosen book.

But not only have they not been able to read the book, they have read a synopsis of a different book altogether, one that bears no resemblance whatsoever to the book that you finished. They are also insisting that they have read the book.

You are frustrated.

You are humiliated. Not once did they acknowledge that yes, you alone had read that bloody book, and you are actually the only person in the room who could talk with any authority about that book, yet yours is the voice they ignore.

The End

So there you go. I have lost count of the number of times when some well-meaning expert will briefly observe PDA boy and tell me authoritatively that he is fine, when I know full well he isn't.

PDA boy is Neurotribes, compared with the expert's printer errored synopsis on the dust jacket. They are reading something else entirely in that brief synopsis, but still insisting that this is him. One brief snapshot in all his masking glory, without once taking the time to listen to those who have actually read the book in full, and they still know him better than I do.

I'm not blaming anyone, but if you are unable to read the book, only the fluffy paragraphs on the jacket, you do not then base your entire knowledge of a modern classic on that synopsis.

You either admit that you can't read it and ask for someone who has to explain it, or you take the time to learn the code, then you can read it yourself. You don't turn round to the one person who has read it and tell them they've got it all wrong.

3 comments:

Very well written. So true....masking is such a massive issue. How is it that those with the power cannot or will not accept that masking plays a huge part in your child's life, contributing to all the behaviours that no one else's sees. Don't judge a book by its cover x

Thankyou for your comment.PDA boy' scare would be so much more straight forward if others could accept he is not the boy they see in front of him, but I sometimes think that they can't admit that they can't see it, so they insist I am wrong.

Very well written. So true....masking is such a massive issue. How is it that those with the power cannot or will not accept that masking plays a huge part in your child's life, contributing to all the behaviours that no one else's sees. Don't judge a book by its cover x